Orgovyx and Erleada

Cy79Fan

I posted in 2018; time for an update; 13+ years and moving forward! I’ve noted there’s not much discussion in the forum about two medications, Orgovyx and Erleada. I thought I’d contribute my experiences to date. Basic information:

I was diagnosed with prostate cancer in 2008 at age 51 with a PSA of 6.2. After biopsy, my diagnosis was T1cNoMo, Gleason 7 (4+3). RRP quickly followed. Pathology kept Gleason at 7 (4+3) but stated that some areas were 10. There was also a change to T2cNoMo. Seminal vesicles and lymph nodes were negative. PSA went to 0.

PSA of .1 appeared in 2010 and rose to .3 in 2011. My urologist recommended radiation, which was accomplished in the fall of 2011. Preparatory to the radiation, pelvic MRI and a bone scan revealed nothing. PSA immediately went to 0 and stayed there for 3 years.

PSA rose from .9 to 2.9 during 2017-2018 at an accelerating pace. I had an Axumin PET scan which found two metastases in my lower right abdomen lymph cells. Cyberknife radiation followed and my PSA returned to 0.

PSA registered again in December 2019 and slowly climbed, reaching 1.2 in July 2021. Another Axumin scan was accomplished that month. One metastasis was definite and a second an indistinct possibility. Unfortunately, both were at the sites previously radiated and cannot be re-radiated.

The urologist recommended we start Androgen Deprivation Therapy (ADT) and brainstormed a different method. Instead of Lupron, we’d use Orgovyx, FDA approved in December 2020. I started Orgovyx in August. Primary side effect for me is hot flashes of moderate severity, several per day and during the night. I get hot, a sweaty forehead, and they last roughly 5 minutes.

Labwork for my November quarterly appointment revealed undetectable PSA and testosterone. Orgovyx was doing its job! Recommendation was to add Erleada, which must be taken at least six hours apart from Orgovyx. My journey with Erleada began just before Thanksgiving and it’s more challenging than Orgovyx.

I take Zolpidem ER for sleeping support. I immediately experienced sleeping changes from Erleada (taken in the evening): an early sleep time bout of nervousness, more hot flashes and vivid dreams.

Now, I’m making sure I not only have a gap of 8 hours between Orgovyx and Erleada and then also 6-7 hours between Erleada and Zolpidem ER. No change yet in my new nighttime adventures.

My primary physician had me get glucose labwork at the end of November, since I’m a borderline diabetic. Compared to July, A1c shot up from 5.9 to 6.7 and glucose from 136 to 150. Ouch! The increase is unusual for me; I believe Orgovyx is responsible. I’ll see the primary in early January to discuss.

The Erleada caused insomnia is challenging enough that I’ve contacted the urologist office. They are researching to determine if I should be switched to a similar medication. I’m guessing Xtandi.

Comments and questions are welcome!

VascodaGama

Re-recurrence

I am sorry for the recurrence. I wonder if anything else apart from the hormonal treatment has been suggested. Did they considered you already as systemic?

What is the opinion of the radiologist? The radiation intensity in SBRT is high enough to destroy the cells in its path. I would think that the bandit is hiding at a different location not identified in the previous PET, and it wasn't striked by the rays. I wonder if a different isotope in PET could help you still in pursuing a RT approach.

Thanks for the update and the comments on your experience with ADT.

Here is your full story;

https://csn.cancer.org/discussion/317635/axumin-pet-scan-whats-next#latest

Best wishes,

VGama

Old Salt

Thanks for the update.

Since you were doing well on Orgovyx, I am puzzled why Erleada (apalutamide) was added. I always felt (!) that one should use one bullet at a time, but I am aware that there have been studies that say otherwise, at least for certain situations.

Cy79Fan

VDG and Old Salt, thanks for your comments!

VDG-The radiation oncologist where the scan was performed compared the 2018 and 2021 scans and made the initial appraisal of no possible radiation. My urologist had the radiation oncologist associated with the urologist practice review as well. He agreed he couldn't re-radiate.

Old Salt-The explanation given to me in my layman's terms: Orgovyx was prescribed to stop the production of testosterone. Unfortunately, the strong survive. Erleada was prescribed to stop surviving cancer cells from absorbing testosterone. They waited 3 months to prescribe Erleada as Orgovyx and Erleada side effects are similar and they wanted to be able to isolate if a side effect developed. The goal I was told, given my case history, is to try to kill the two metastasis.

I spent the afternoon researching side effects related my sleep med, Zolpidem ER. Erleada and Xtandi are both possibilities, as well as anti-anxiety med Citalopram.

I have to laugh at myself; 6 months ago I was on 3 medications (Metformin the other), no problems. Now I'm up to 5 medications and its's consuming my life!

Josephg

https://csn.cancer.org/discussion/comment/1691427#Comment_1691427

Yes, the current thinking is to attack the bandit with multiple drugs simultaneously to achieve a higher kill rate and to lengthen the vacation time between taking these medications. My Oncologist says that clinical studies coming out of Europe suggest much better outcomes, using this multiple simultaneous medications approach. That is why she prescribed both Lupron and Zytiga (and Prednisone) as my current medication cocktail.

Cy79Fan

Thanks Josephg! Your explanation is similar to what my urologist said.

Cy79Fan

And the game plan is to do a PET scan in July to determine effectiveness of the strategy. Scan might be PSMA if available in Colorado by then. A scan can't be done any earlier because of insurance. Since my PSA went down from July to November, we have to the the 1 year scan anniversary pass before the next one can be performed.

JJMWFF1955

I had an axumin PET and it showed metastasized to 2 lymph nodes and went on Orgovyx and Erleada and they both working fine then just recently I get letter from my insurance giving approval for Leuprolide acetate. Or course insurance would be happy about that since they save lots of money but the problem is Leuprolide does not work as well as Orgovyx. It does not seem to matter what is best for me but all about cost. Very depressing that the health care system needs improvement.

Cy79Fan

I've discontinued Zolpidem ER due to conflict with Erleada. Still shaking out getting a good night's sleep but improving.

I experienced significant blood in my urine starting 12/24 that put me in the ER on 12/29 (less than 24 hrs before an appointment with the urologist--bummer) Catheter installed to relieve blockage; took my new friend home with me. Urologist performed a cystoscopy on January 4. Blood likely caused by irritation from 2011 radiation. Source of bleeding cauterized, recovering from catheter-greater incontinence than I had before. CT-urogram later in January revealed no other urinary system issues. Urogram did reveal a new metastasis in lower left abdomen that would have started since PET scan in July. Also showed that metastasis identified in July is shrinking. Another urology appointment in January with lab work showed some anemia from the bladder bleed but all other labs fine--tolerating Orgovyx and Erleada well.

Primary physician doubled daily dosage of Metformin to manage higher A1c.

Cy79Fan

JJMWFF1955: Insurance is difficult. I'm fortunate; my urology practice has a person who specifically tackles insurance companies to get them to authorize the best treatment at the best cost for the patient.

leocamp

After being on Erleada and Eligard (shot every six months to stop testosterone production) For several months I have had tingling, numbness and burning in both feet and legs below knees, has anybody else suffered similar side effects from Erleada? I have had numerous blood test and nerve test done and nothing has stood out as to a cause!!!

Clevelandguy

https://csn.cancer.org/discussion/comment/1692863#Comment_1692863

Hi,

Look into it, you can use Proton therapy after other radiation type therapies have failed. I have included a link for you to study.

https://www.mdanderson.org/patients-family/diagnosis-treatment/care-centers-clinics/proton-therapy-center/what-is-proton-therapy.html#:~:text=Additionally%2C%20proton%20therapy%20can%20be,or%20radiation%20exposure%20to%20others.

Dave 3+4